Would You Like An Autoimmune Disorder With Your Autoimmune Disorder? (Part 5)

So I had no idea when I started this blog it was going to get so weird. And so science-y. And so… personal. For the first time today, I am hesitating before typing. Somehow, sharing the details of this bizarre diagnosis seems more personal than sharing the details of my colonoscopy prep. And yet… I know there’s a few of you still reading, and it feels bad to leave you hanging.

I think the thing is, when I was just writing about diabetes, I felt like I was doing so for a real purpose (body image! Self Love! Stuff like that!)…. to write about my ongoing medical saga feels intimate at best, self-indulgent at worst. I don’t know what I’m imparting…except a good story.

So. Maybe a good story is enough.

For 26 years, I was NOT the person with the weird medical stuff. I was the fat kid with an entirely normal body. And now my body feels like a freak show.

Ah well.

And so, to resume:

Dr. S called when I was JUST about to walk down into the subway. So this call, this terribly important, answers-filled call, wound up happening on the street, when you’re in one of those places where you’re like “uh huh…can you finish please because I’m trying to get somewhere?”

That brought the world to a halt. After weeks of the absolute terror of the unknown, my first emotion was relief: an answer. Followed quickly by fear: what answer?? At times, I had thought that any answer would have been better than this weird, “We-don’t-quite-understand-why-you’re-still-upright-because-these-numbers-are-so-bad-but-we-have-no-idea-what’s-going-on-with-you” thing. Now that I was moments from getting my answer, though, I was having second thoughts. What in the hell did he find?

Dr. S had biopsied the crap out of me, from my mouth all the way to my tush. Almost every biopsy had come back normal (I now like to tell people I basically got a free colon cancer screening, 23 years before I needed it! Jealous?!).

Except in one place.

The samples from my “Gastroesophageal junction” (where my stomach meets my esophagus) were filllllllllled with our good friends, eosinophils. Those same white blood cells that were swimming around my blood in such a high concentration were in equal abundance in this one part of my throat.

As Dr. S explained, from a pathology standpoint, that’s pretty much all you need to make a diagnosis of something called EOE – Eosinophilic Esophagitis. He seemed to be hesitating, though, because I hadn’t shown any symptoms.

“Have you ever had trouble swallowing – I mean, choking on food?” he asked casually.

It is hard to describe the impact that this moment had on me. But imagine you have this gross, embarrassing secret re: your body. Frankly, I believe that we all do: maybe you pick your nose, or you scratch your butt with your bare hand, or you pick out your eyelashes with your fingers. And because it’s super gross and embarrassing, you don’t really think about it, not even really when it’s happening. You just do it, and otherwise you ignore it, and you never consider why you do it, or what it could mean… it’s just that Thing You Don’t Think About. And you’ve been doing it and not thinking about it for your whole life.

And then imagine one day a doctor is like “have you ever picked out your eyelashes?”

It would, you can imagine, be a strange moment. Part of you is like “WHAT ME NO NO WAY DUDE DONT KNOW WHAT YOURE TALKING ABOUT”, because you’ve buried the shame of this action so deep it doesn’t even register when the doctor says it. But another part of you would be like “WHAT. THE?” And you’d assume your doctor maybe has magical powers. And you want to ask “what am I thinking right now?” because obviously your doctor can read your mind, if he knows this secret about you so well.

And then another, smaller part of you is maybe like “Wait… so maybe this eyelash-picking thing is… not my fault?”

So…now take out “eyelash picking” and replace it with “choking on food”, and you can start to understand what this moment meant for me.

Because you guys: I have choked on food my whole life. Not every meal, not even every month, but probably a hundred times in my life, I’ve been eating something and felt it get… stuck, and started to panic and choke. I usually have to run to the bathroom and… (warning…things are going to get real now…)…. use some combination of my fingers and a bottle of water to either force it up or force it down.

It is disgusting, and embarrassing, and awful. And scary.

And it’s not something I think about. Because somewhere along the line, I figured that this was happening because, as a gross fatass, I just didn’t “chew” properly. Like, where normal people could chew their food enough to swallow it in a manageable way, I was obviously such a gross pig that I couldn’t help scarfing down my food like a beast, and swallowing so quickly that I didn’t give my teeth the chance to get that food to a swallow-able state for me. This choking thing was just another example of how disgusting I was.

One time, I was on a road trip with friends, driving down a Florida highway, when a goldfish got stuck. It was so bad that I had to pull over in the middle of the highway and stand with my fingers down my throat, trying to get that goldfish out while my friends waited in the car, having no idea what the heck was going on. I finally vomited all over the shoulder, and then a cop drove up, prepared, I’m sure, to ticket me for stopping the car on the busy freeway. She saw the puddle of vomit and instead elected to direct me to the nearest rest stop.

Another time, I was on vacation with my BOYFRIEND’S PARENTS and a piece of steak got stuck. I had to run to the bathroom, where I struggled for 10 minutes or so. I slunk back to the table and attempted to find a polite, charming way to explain to them that their son’s girlfriend never learned how to chew.

Another time, I was a restaurant in Times Square and a piece of chicken got stuck. I rushed to the bathroom, but the restaurant was attached to a hotel, and the bathroom was in the hotel lobby, and you needed a key card to get in. I struggled to explain that to a server (but of course, I couldn’t speak, because the chicken was stuck), and finally communicated that I wanted the card. When I got into the bathroom, it was occupied by about a dozen little girls under 7, all of whom were using the toilets or waiting to. Desperate and panicked, with spit and bile coming out of my mouth, I rushed onto the street and wound up vomiting in the driveway of a parking garage, in full view of a group of tourists.

The discomfort when it’s happening to me is awful, and the panic (because I’m choking) is worse. The relief when the thing moves? Incredible.

This has been a shameful but accepted part of my life for at least 2 decades. I would never dream of mentioning it to a doctor as a symptom, because to me it has never been anything more than an example of my own ineptitude. (It makes me think of a line I wrote in an earlier post: “It’s amazing how we can get used to things.”)

And now, with this innocent question, Dr. S had just completely blown the lid off this whole thing. Although I had no idea what “Eosinophilic Esophagitis” meant; what it portended, I could not help but bask in the comfort of knowing that this secret, shameful thing I’d carried with me my whole life actually had a medical explanation. It wasn’t my fault!

So, as casually as possible, I answered that, yes, I had actually been choking on food for decades and Dr. S was all, “ummm…. you didn’t tell me that?” and I was like “I thought it was just cuz I suck at chewing!” and he was like “OK, well. I’m convinced. You have EOE.”

As he explained (to me, while I was still standing outside the subway entrance, my world having been just rocked), EOE is, just like type 1 diabetes, an autoimmune disorder. Just as my immune system got confused and attacked my pancreas, so too was it confused and attacking my esophagus. The primary symptom of EOE is chronic inflammation of the esophagus, caused by all these eosinophils that have been unnecessarily sent there. This causes swelling and inflammation which narrows the esophagus, increasing the risk of, you guessed it, food getting stuck.

And apparently, food getting stuck can get pretty dangerous. Although I’ve never had to, sometimes you have to go to the emergency room to get it removed. Worst case scenario, it punctures a hole in your esophagus, which, in medical terms, is “really bad.” This isn’t just some embarrassing habit I should be ashamed of – it’s a scary, dangerous thing.

My biggest fear in getting Type 1 diabetes is that it would open the floodgates, and other autoimmune disorders would start pouring in. I’m barely keeping it together managing this one disease; I do not need celiac or crohns or weird EOE things to join the roster.

However, in this case, the EOE actually predated the diabetes – by decades. I’ve been choking on food my whole life. And, as Dr. S explained, he’d looked over my blood work from the last 3 years that I’ve been going to this practice, and the lowest my eosinophils ever were was 4.2%. Normal is under 5%, but even before I hopped up to the 40s, I routinely had numbers like 9%, 12%, 15%. But because you see those numbers when someone has seasonal allergies, among other (relatively) benign things, my doctors never worried about that.

Also, many people with EOE don’t also have this “peripheral eosinophilia” like I do – AKA the eosinophils in my blood too. So seeing 9% or 12% before this biopsy, you’d never know to consider EOE. Especially since I’d never told any doctors that I choked on food. But with the biopsy completed, it was clear that my eosinophils and EOE has been ebbing and flowing for years. Probably many, many years.

In a way, this is also a relief : as I mentioned, I am terrified that diabetes will mark a new age where I just get weird disorder after weird disorder. But in this case, EOE was rampant long before diabetes. I can’t blame diabetes for EOE. (Can I blame EOE for diabetes?)

Of course, this “answer”, satisfying as it was on a spiritual level, was all well and good, but the real question was what to do about it.

That gets tougher.

See, EOE has been around for a while, but it’s only recently that doctors have really started studying it. The number of cases of this in recent years has exploded in the same way celiac has, or Type 1 Diabetes has, so suddenly doctors are really starting to have to consider what the heck to do about it.

It’s commonly understood that EOE is probably caused by one of two things : acid reflux or food allergies.

Acid reflux is the good one – for some people, having acid in their esophagus presents like EOE, although it’s not really “true” EOE; more like EOE-lite. The solution is easy: you take acid reducers, the eosinophils go away.

The much less convenient cause is food allergies. You’re allergic to something and it causes eosinophils to be present in the esophagus. The solution: figure out what you’re allergic to and remove it from the diet.

That’s way less easy. Because while there are ways to test for allergies, those ways are painfully inadequate. They can do blood tests to test for an “immunoglobulin response”, but that’s just one way that allergies manifest. You can be allergic to something and have it come up negative on the blood test. They can do skin tests, but… same deal.

The only real way to confirm an allergy in this case: not eat the thing you are allergic to for a while and then do another biopsy and confirm that the eosinophils are gone.

The more important question, though, was why did it matter? I have survived for 27 years on my “food gets stuck, puke it up” strategy. Why change?

Well… decades of chronic inflammation can be very dangerous. If this goes on till I’m 50, my esophagus might be so swollen that I’d have trouble eating anything, swallowing. Plus it greatly increases the risks of a tear, something super awful and scary. It could require surgery, a risky, terrible surgery that could leave me with a lot of problems.

So we had to figure it out. Dr S was hoping that the answer was going to be acid: to test that, I had to take a BOATLOAD of prilosec for 8 weeks, and then get another biopsy.

I don’t think either of us were particularly optimistic on that front, though. See, I already have a food allergy, to tree nuts, and it’s quite severe. And I’m a type 1 diabetic. Autoimmune and allergy issues? Kinda my thing. So banking on the likelihood I was going to get lucky and have the answer be acid seemed… stupid.

Dr. S sent me for allergy testing, which confirmed on an immunoglobulin level, that I am super allergic to tree nuts (no surprise there), and then came back with a very minimal response to like, 25 different things: everything from chickpeas to green beans.

The allergist was unimpressed by this, confirming that given how minimal these results were, they meant absolutely nothing and I could continue eating those foods as normal. Dr. S was slightly more impressed by this – although every response I got was minimal (to put in in perspective – my very severe allergy to tree nuts came back at like a “5.5”. Every other food came back between “0.0” and “0.5”), it implied that my immune system is one screwed up piece of garbage, and clearly reacts on at least a nominal level to just about everything.

He gave me the two months to take the acid reducers, but a month later, when all the allergy tests came back, he basically told me to call it off. We could stop kidding ourselves: it wasn’t acid. (A choking incident after a few weeks of the acid reducers pretty much put the nail in that coffin.) It was time to move on to the much-less-pleasant Plan B.

What was Plan B?

An elimination diet. Stop eating everything, and I mean everything.

Literally, you stop eating everything off the list of the 6 most common allergens.

After 6 weeks of an elimination diet, I was to be biopsied again. If the eosinophils were gone, I could add one of the 6 categories back in, do another 6 weeks with just that back in, and get biopsied again. If the eosinophils were gone, I could add another of the 6 back in. If they were back, hello 6 weeks of nothing, hello another biopsy. Gone then? 6 weeks with a different of the 6 back in. Because it was also possible that my allergy was not just from eggs, say, but from the particular combination of eggs and cheese. It had to be done painstakingly, one at a time.

I looked to the future of months and months of eating nothing but potatoes and spinach, of being repeatedly put under anesthesia while a doctor pulled out little pieces of my throat.

13 thoughts on “Would You Like An Autoimmune Disorder With Your Autoimmune Disorder? (Part 5)”

I hope you’ll come join us on Facebook in the ‘Adults with EGIDs Support Group’! If you start elimination diet, you may want to look up the app “EOE Tracker” (Apple only, no Android).
I have had EoE for about 7 yrs and still don’t know my triggers.

I am so sorry you have had EoE for 7 years and do not know your triggers. My GI referred me for food allergy testing upon my diagnosis, which I strongly suggest. Ask your GI for a referral to a food allergist, or locate one at your nearest teaching hospital. Work with a food allergist not only for your triggers, but also for related foods to avoid during high-allergy times of the year. For instance, I am ragweed allergic and now know to avoid cantaloupe during the fall. Knowing my food triggers is not 100% foolproof, but is a tremendous help overall. Good luck.

Wow. Finally, someone else with T1D and EOE. I was diagnosed with diabetes almost 24 years ago and diagnosed with EOE in late 2013/early 2014. I can relate to so much of what you’re saying (and know exactly how horrible trying to dislodge stuck food is…). My diagnosis story is here, if you’re interested in reading.

Yeah, I’m sorry you’re dealing with both these horrible diseases, too. I’m still trying to figure out all the foods that trigger my EOE. Like you, practically all the blood tests my allergist did came back mildly positive (except for potato, which I’ve been severely allergic to most of my life and came back extremely high). Have you been doing the trial and scope method? My gastroenterologist isn’t willing to do that, which leaves me rather unimpressed.

I did… and so far the culprit appears to be yogurt. I’ve cut it out (and am super bummed about that), but the symptoms are so, so much better, and my peripheral eosinophilia is also way down. I also react to the yogurt WAY worse in the Summer – I’ve read that, for whatever crazy reason, EOS can get a lot worse in the summer?! So weird.

I felt so much relief and agony while reading your experience. I am a 29 year old male and have had these same exact symptoms for at least 10 years now. I had an endoscopy done 4 years ago and it showed elevated levels of eosiniphils (nearly double the limit). Now I am just in the beginning stages of diagnosis and treatment, I am writing this now, not fully diagnosed but am 99.9% positive this is the case. I will try a food allergist and some swallowed steroid hopefully. Good luck and please anyone with EOE feel free to reach out to share more stories.

Far out I have been googling my symptoms for years and never discovered that it could be EoE. I waited 7 years to get this checked out, after getting out of hospital I nearly wish that I didn’t. Had an endoscopy and because my oesophagus is like thin sandpaper they managed to put a big tear in it. The doctor told me that it happened because my condition is severe. Gave me acid tablets to have for 2 months then another endoscopy, yikes I took them for two days and I’ve never experienced a continuous stream of shit coming out of my arse so I stopped them. My doctor told me that there is no point in having allergy tests done and said the only thing I can do is the elimination diet but then explained to me that this is very hard and I would need to keep coming in for endoscopies, no thanks. My plan is to have Allergy hair testing done (Electroacupunture). Just Google it or talk to a naturopath. All you need is half a teaspoon of hair and about $100. I did this test about 10 years ago, the results made perfect sense to me identifying my allergies and intolerances. I stuck to it and after three months all of my conditions had gone. My list of irritants was quite long so over the years I slid back into my old ways. You should have them done at least every 2 years so I’m about to have another one done. No drugs for me, this is the way. I will see what my next endoscopy reveals.